Went to the GP's this morning to talk over a few things and on my walk home I got to thinking, as you do, what a difference two years can make. Two years in which I have gained the knowledge to question, disagree and share opinions with my doctor.
Rewind two years and I was at the mercy of what she decided. If she decided not to do certain blood tests I didn't have the confidence to argue. If she decided to increase or decrease my thyroid medication I didn't have the knowledge to object.
Fast forward two years to where I am now. I have spent two years listening to and learning from members on this site, past and present, with all their knowledge, wisdom and know how. I have sent two years searching google and reading and learning about all things thyroid and if I can see the difference I wonder what my GP makes of it all.
Today's Appointment.
Iron.
I questioned the amount of iron I was now supposed to be taking as, as far as I was concerned, I was being prescribed too much, two years ago I would not have dared do such a thing.
"why is it that I went into hosp a few weeks ago taking 400mg's and I came out needing to take 600mg's. Surely having ovaries removed has nothing to do with iron". She did a bit of tapping on her computer and finally said "Go back to 400mg's"
PPI's
"Can you take the PPI's that the gastro prescribed for me off my repeat prescription as I am not willing to take them", she gave me one of her "looks" (over the top of her glasses with eyebrows raised) "why" she asked, "because I am not confident that they are the best course of action for me and mean to improve my gut issues by diet". She sat back and asked "How" to which I replied "by stopping all processed foods and slowly reducing the amount of gluten I eat". She seemed satisfied with this and more computer tapping was needed to remove the PPI's.
vitD
"As you are aware I am self medicating 3,000iu vitd daily, due to unstable levels, but I want to know how you intend to keep a check on these levels for me" baring in mind this was the very same doctor who, two years previous, had flatly refused to test my vitd or anything else I had asked for. "We'll do a vitd test every time we test your thyroid levels".
Last but not least came my main reasons for going.
"I have been off work 5 weeks now due to my op and want to get back to work but have, as yet, had no appt from the hosp to assess whether I am fit enough so will you sign me fit for work because if you don't I'll be back up here next week for more tablets" Another one of her looks came my way with the question "what for" to which I replied "lazyitas" This raised a smile out of her and she then asked me how I was feeling and if I have had any problems, "no" I replied "then if you haven't been given an appt by next week phone the surgery and I'll sign you fit for work" she said.
So the conclusion to me little tale is - even with a foggy brain, a tired and aching body and all that this illness has thrown at me, with help from others and a lot of effort from myself the knowledge and confidence I have gained has had a very positive effect on the relationship I now have with my GP. She knows I know enough to make my own informed decisions, she knows I will listen to her when necessary but wont always agree and, most importantly, she trusts my judgement. So ladies and gents read, listen and learn as much as you can, when you can, and gain as much knowledge as you can because the more knowledge you acquire the more your confidence grows and the more your confidence grows the more power you take out of your GP's hands and place safely in your own.
Moggie x
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Well done Moggie! I'd say you have successfully taken responsibility for your own health and should only continue to improve. I think education is the key to an empowered and successful patient. PR
I think the congratulations has got to go to this site and its members. Yes you can learn and research all you want but to be able to communicate daily with knowledgeable, compassionate people is what really makes all the difference.
Didn't think of it like that Marz but I must admit to being amazed at her change in attitude towards me. There is a vast difference between our first meeting, where I wasn't really given the time of day, to today's meeting where I was definitely the one in control.
Great post moggie! So very well done to you, and to all those who have helped you. And now you pass on your knowledge to others too. What a star you are xx
I am hoping that people read this post and think to themselves "well if she can do it then so can I" because every one of us can make these changes to some degree or other. The key to this is knowledge and after the knowledge comes confidence and once you have that there will be no stopping you.
Very impressive Moggie Am going to try your approach with my GP I'll let you know how I get on. You have done very well and being able to help others in their quest is lovely Thank you
You'll have to let me know how you get on - yes it has taken myself and my GP two years to reach this level of understanding but, in my opinion, well worth the wait. Others, I'm sure, will get there much quicker than me but the end result will be them same - a GP and patient working well together.
That's great I am still struggling to confront gp' and doctors. I do have knowledge but I hate them so much for what they did to me that I just cannot face any of them. What I do is writing a lot of letters. I wish I did not have to.
Surely it doesn't matter how you communicate as long as you do. I also write quite a few letter, to my endo and gastro, and apply the same strategy, they know I know a certain amount about my condition and am always willing to learn more and will work with me.
I hope you get over your mistrust of doctors in the not to distant future and find a good one that you can feel comfortable working with. They are out there you know, you just haven't found him/her yet.
Thank you Moggie. I wish I could trust somebody, that would change a lot but after what I have been through I just struggle so much. Recently it is just impossibe, so my health suffers even more. I just have no strenght for constant arguments, arguments do not work any way, nor I have ability to be diplomatic any longer. I have lost my drive and with this ilness this is a constant, never ending battle. I wish it could all just go away. E xx
What a lovely change to see someone communicating with their gp in this way, you got your points over got what you felt was right for you but did It in a manner that encompassed mutual respect, too many times you see posts where people say they are going to demand what they want and refer to health professionals as morons, idiots ect
wel done we can all learn some lessons from you on how to communicate effectively xx
I'm afraid I learnt the hard way - I used to try and demand and accuse but soon realised that this attitude got me nowhere - as you say a certain degree of mutual respect has to come into play if you are really going to get the best out of the medical professionals you deal with, and yes good communication, as well as knowledge, is the key.
It is so much easier to face when you spend time here and begin to unravel some of the mysteries. You did good, both at the doc's and empowering some of us with your virtues. After numerous fails and humiliations at the doctors I actually managed to get him laughing whilst agreeing to all my terms and conditions.
Well done you and you are so right because as soon as the unravelling begins then so the shift in relationship with your doctor begins. The more you unravel the more you can decide if and what treatment is right for you and can discuss these options with your GP. Don't get me wrong, although my GP let me try T3 I think she would have a hissy fit at NDT, but knowing your GP's limitations is also part of it. I don't go in asking for something that I know she would not be happy giving me as I don't want to upset that balance we have now struck.
Moggie x
Surely you have to question why she didn't do her job in the first place?
Sorry, not meaning to be grumpy but just believe from my own experience that GPs need a kick up the proverbial and shouldn't be treating us as village idiots.
On a positive note, well done for educating her and well done for your efforts in regaining your health.
The reason my meds were messed up was not her fault - she had paperwork from the hosp telling her to prescribe the extra iron as well as the PPI's so I can't lay the blame at her door.
Yes I was very annoyed with her at one point for refusing to test any of my vitamins and still blame her for the disastrous outcome I had with T3 because if she had have done as I asked and tested things she would have realised that I didn't need T3 at all as most of my remaining symptoms could be attributed to low vitamins. But the past is the past and blaming her wasn't going to get me anywhere so onwards and upwards and, like you said, I think she may have learnt from me that some patients do want to take control of their health and are more than capable of doing so.
Certainly a learning curve for her too so that's no bad thing.
Must confess to being completely changed by my thyroid experience - now I stand up for myself, have no fear of disagreeing with people and feel that I can hold my own. I feel extremely strongly about injustice and, in many ways, I've become a 'better' person.
I agree - the journey you find yourself on, but never wanted, changes every aspect of your life. You do not only change physically but mentally to. I used to be such a hot head (still can be at times) but I now find myself with much more patience and empathy for others that I sometimes stop and think "where did that person come from".
Like you I can hold my own, but have always been able to do so (if you didn't hold your own in the East End of London you got squashed.lol.) but I seemed to have calmed down a lot more and like you I feel I am a better person for it.
Like you I wonder why they sometimes need so much laborious winning-over at a time when you may really need their help and are not necessarily well-equipped with the energy or inclination to do it all.
Well done to Moggie for getting there in the end. It's not a job for the faint-hearted.
Thank you for your comment and I can understand why the "laborious winning-over" process can be too much for some people, especially when you are under medicated or lacking in the vital vitamins that we need for our thyroid meds to work properly.
You can also get caught in a catch twenty two situation, which is what happened to me when my GP refused to test any of these vital vitamins, and it seems like you are banging your head up against a brick wall at times. But with perseverance, determination and a different approach the problems can sometimes be resolved.
Easy for me to say because my vitamins are all now sorted and my thyroid medication is working well but I can see, for some people, this seems an impossible task. It isn't impossible as there is always a different approach - taking, and acting on, advise and help from this site is one of those different approaches, and was the most important one for me.
well done moggie.exactly my experience but my gp refuses to acknowledge anything from the internet.like edysia I have been writing to my dr but to no avail so far,have a meeting with him on 5th march.still stick by my friends on this forum which has helped me in the last 3 years even if gp dont like it.hopefully he will change his attitude soon.
Rewind two years and I was at the mercy of what she decided. If she decided not to do certain blood tests I didn't have the confidence to argue. If she decided to increase or decrease my thyroid medication I didn't have the knowledge to object.
Fast forward two years to where I am now. I have spent two years listening to and learning from members on this site, past and present, with all their knowledge, wisdom and know how. I have sent two years searching google and reading and learning about all things thyroid and if I can see the difference I wonder what my GP makes of it all.
When I grow up I wanna be just like you On a serious note...wow it's impressive that you are able to have such a rapport with her now. Truly inspiring and really hope I can manage to get there one day too. Don't think I have enough knowledge yet to be able to look and sound confident especially as I am so not a confident person.
Out of curiosity how did you manage to turn the tide,what was the changing point? You say you used demand,accuse etc...what did you do exactly on that first different appointment? Was it just a case of going in with the knowledge?
I think the more contact I had with her the more she realise that I didn't ask for things that wasn't needed. Take the Vitd for example, and her refusal to test. After reading on this site that some people had encountered doctors who refuse to take notice of private blood results I booked another appt and asked is she would except private blood results before ordering one (baring in mind she had refuse the test the previous week) and after asking what lab I intended to use my answer of "Blue Horizon" seemed to throw her a bit and the next thing she was saying "o.k. I'll do the test". When the result came back at 12.5 she seemed was apologetic (yes a doctor that actually admits when they are wrong) and sorted out the high powered supplements required.
Same thing happened with the iron - she wouldn't test and even draw me a pretty little picture of why my red blood cells were small but plentiful. When I was referred to an endo and he did a whole battery of tests - including a full iron panel - and my iron level came back at 9 and ferritin at 17 yet again she realised that I had only been asking for a test that had been proven to be needed.
I have also refused a lot of medication - beta blockers and warfarin for example, accompanied with a comment of "you are trying to put a sticking plaster over the situation, I want to find out why my thyroid meds are causing my heart palps not mask the problem" and to my surprise she agreed that this is what the beta blockers would be doing.
So I think the short answer would be that the more she got to know me the more she realised that I didn't take the easy option and was a bit like a dog with a bone - I didn't let go until I was satisfied with the treatment or answers that were offered to me.
I suppose it also depends on the doctors attitude - some really do think that they are little god's and no matter what you do you wont change that attitude, which is why you will always see me telling people to change their GP (same surgery) and keep changing them until you find one that you can connect with. I had tried four different doctors until I found this one and, no she wasn't perfect and got things wrong at times, but I stuck with her and now have, what I believe is, a good patient/doctor relationship.
You have really worked hard with her and I'm so happy for you that you're in such a nice comfortable place with her. I shall take a leaf from your book and try to tone it down a little at my next appointment.
I guess I get so anxious about it all that when I'm in there I probably sound like I'm attacking more than anything else. So the trick is read lots,ask questions on here,learn from other people's experiences, find the info to back up what you are trying to say to the gp and go in as if you want to have a discussion not an argument and most importantly don't sit there and take everything they tell you as gospel because most likely they know less about the thyroid than we do!
I had this kind of relationship with a doctor that left the practice 18 months ago and I kick myself everyday for not going to see him when I started having symptoms. At the time I had no idea what was going and barely even knew where a thyroid was let alone what it did When I was breastfeeding my second child I kept getting infections, I first saw a doctor who insisted it was mastitis. I had been doing my reading and was convinced it was thrush and mastitis and the antibiotics she kept giving me were just making the thrush worse. I then went to see this other doctor and managed to build a really lovely relationship with him, he listened and when I questioned things he woudln't shoot me down like the other doctor did he would go "hmmm interesting,let me look that up". He emigrated to Australia and I miss him so very much. The last two gps I have seen wouldn't be worthy of cleaning his backside
So I totally agree that doctors like yours exist Moggie and I shall not give up and will keep trying. If I don't get anywhere with the current one then I'll move to a different practice.
Your old doctor sounded lovely - Our loss is Australia's gain I'm afraid - and a great pity that you found a doctor you liked and respected only for him to emigrate. My doctor is old (past 60) so I know she wont be around much longer so will be in the same boat as you when that happens, but hopefully I will be in a position (further along my journey) to be able to deal with it.
Yes it is very easy to get annoyed and agitated when a doctor is not listening or talking to you but treating you like a time wasting hypochondriac - I have always said that the key to this illness and better treatment is to find a good GP. Find that key and you will open up all sorts of possibilities.
Maybe a subtle change of attitude will bring you results, but I can also understand how anxious people on here get when having to face a doctor, especially one that has no people skills (they should have to pass exams, as far as I'm concerned, in people skills).
Your determined and gaining knowledge all the time so you'll get the results your want I'm sure. It takes time and energy (sometimes energy that we don't have and cant spare) but you'll reap the rewards in the end.
Moggie x
I have just read your post and all replies ........Moggie you have certainly been on a long journey and I want to thank you for giving much thought to and taking time to share it with us all here.
Yes you are right.....this site is a super source of information and support and I think we can all take inspiration from the message you have given us.
I have been reading,researching and continually asking questions myself.It is early days yet for me but even I can feel a slight change in my GP since I have been gaining knowledge from you all.Sometimes I get a bit weary and feel like I can't read another article or book or make more notes and I sleep on it for a while.
However,I come back again and I think your message today will help keep me plugging away in order to become more confident in my approach to my doctor and specialist.
After all this isn't just about me......I saw my mother suffer for many years completely unaware of the real source of her ill health and I want future generations to have better
treatment when they first need it and not 2 decades later.
Thanks Moggie and let's hope you soon return to work feeling refreshed and well X
Great post Moggie thanks for sharing , I just plodded along before ,but you and the rest of the members on this site have given me the confidence to stand up for myself . I am only on the start of my journey to get my problems sorted .And i think it helps to know that you are not alone on your journey to health.Lizzy x
As long as you are a member of this site you will never be alone, short of advice or lacking support. You might be at the start of your journey but you can lean of plenty of people who, through their own journey and experiences, will be only to willing to help.
Well done Moggie I love your style - and you are so right, being armed with knowledge puts you in a more powerful position. Such a shame we have to put up a fight for decent treatment. Hope you get back to work soon
Yes knowledge certainly is power when you are dealing with the NHS. As you say, its a shame that you have to fight for your health the way you do, and I am sure I have got a lot more fighting to do, but good results can come your way if you are determined enough.
I couldn't agree with you more Maggie. Taking control of my own diagnosis and treatment is the best thing I've ever done. My doctor is passively supportive. He doesn't take the lead, but he doesn't try to stop me. I said to him just a few weeks ago that "I'm missing something and I will find out what". He didn't offer to help, but he didn't shoot me down in flames or jeer at me as would have happened previously.
Without TUK and HU we would also not be where we are today, that's for sure.
We are still on our long 'getting ourselves well' journey, but know that with the help of you all on here we will eventually get to where we need to be health wise.
Here, here Coastwalker. This site is the source of empowerment and knowledge to help us take the balance of power into our own hands. It's just so amazing when people share their own experience and knowledge - and fascinating when you realise that what works well for one, will do the total opposite for someone else. Something that doctors simply fail to acknowledge.
Brilliant Moggie. I second this sentiment. I can say exactly the same thing has happens with me and the good relationship I have built up with my GP and endo. Both of which have only been possible by this forum and other thyroid sites, a lot of research and MOST IMPORTANTLY all the very knowledgable fellow thyroid suffers who share their valuable wisdom with us. I thank everyone involved as you/they/everyone are helping me get better. I in turn relay my knowledge with others to try to help them.
I feel sorry for those 1000's of people out there, who do not know about TUK,HU, and the internet, who are suffering because of lack of knowledge. Knowledge is power!
Glad you are making headway Moggie -may it continue
Great to hear a story so similar to my own and just goes to show that this site, and the knowledge you gain from its members, really can turn the tide in the right direction.
Lets hope this post, and answers like yours, gives others the hope and determination they need to continue fighting for their health.
I echo a lot of what you have said, Moggie, what a lovely post.
I have learnt so much from this site and, thanks solely to the advice I have read here, felt more empowered to ask my GP and endo for vitamin tests etc. It had never occurred to me that I had anything more than Hashimoto's (because you're "not really ill" with it after all) - it seems that many of my symptoms are now associated with all sorts of deficiencies. My endo seems to be pretty good, and we are working through sorting everything out, albeit very slowly. It has not been easy at all; I don't ever want to go into appointments sounding like a "know-it-all", but going in with a list of sensible questions and requests seems to be working so far.
This forum has been a lifeline. Without it, I am not sure I would be coping too well at all. Well done to Moggie and all the other posters and admins!
Thank you, and well done you for taking the knowledge you gained and putting it into action - this is what makes answering question and posts worth while.
Just want to say that many of your comments have helped me to be "braver" when it comes to the medical profession. You taught me to think of my health, put myself first and if I didnt get the results I wanted first time, be persistent. You have been the person that has answered most of my posts and truly, I thank you so much
Im almost a year into my journey of being medicated (probably 3 years + that I have been ill) and I am finally FINALLY seeing light!! I was getting ready today to come to work and I had to keep checking my watch as I didnt believe what it said - I was an hour earlier getting out of bed (doesnt sound a lot to the average person but us hypos know what that means!), I wasnt tired at all and I was really organised getting ready, no palpitations getting ready like usual (due to stressing myself out because I was late). I actually sat at the kitchen table, read the paper and had a cuppa before heading off. This is just unheard of, normally I would be running out the door, stressed, hot and bothered and still yawning.
Thank you Moggie and thank you to all those before you that gave you your knowledge. I feel so happy today and it just would never have been like this if I had of just did what the doctor told me. Like you, its been this site, the hours and hours of research and of course my husband who must have the shoulders the width of England to have put up and carried me through this nightmare journey!!
Thanks you for that. I have been keeping informed of your journey through your questions and I must correct you and say you have had some wonderful answers from lots of members on this site. Yes we did have a lot of contact when you first found us but others have had a vast input in all your questions. So its nice to know that my help has been of benefit to you but I really cant take as much credit as you give me (that wouldn't sit well with me) but say everyone on this site will do as much as they can, with the knowledge they have, its just that I have been on here quite a while now and have a good variety of knowledge that I willingly share.
I am so glad you are now reaping the benefits of the advice you have been given, by myself and others, and are feeling so much better. I think my post has shown people that they don't have to go to war with their doctors or endo's they just need to take responsibility for what they are allowing their doctors to get away with, or not to get away with, and to do that you need to have knowledge and confidence and this site it where you get that from.
Wishing you well in your continuing journey and I hope the improvement you are now feeling continues.
Moggie x
So pleased to read your positive post. Being a newbie and reading everything plus trying to make sense of it all is mind boggling.
Feeling unwell at the moment ( I'm hyper) tum not good, headache, plus wanting to sit by the fire to feel warm. I'm feeling pretty fed up. Thought with reduction in meds I was going to be feeling better not worse.
Thank you Moggie. I will try not to get disheartened and remember your post.
Thank you for your reply and I hope my post, and the many positive replies, will help you along with your journey.
The biggest frustration for me is that I know nothing about hyperthyroidism and so cant really comment on posts or questions posted by being who are hyper. To be able to answer people with confidence you need first hand experience and I have no experience whatsoever about your illness. Yes I could read loads and research but I would never fully understand what people like you are going through and why because I have never experienced it.
Have you got a good endo to help you along your way?
Moggie x
May the power be with you! What an inspiring result!
Note about the PPI's: I understood that hypothyroid patients made less, not more stomach acid, and need betaine hydrochloride added to their diet to improve digestion. The symptoms of too little and too much stomach acid are the same - indigestion and reflux. It worked for me but please do some reading first.
The fresh food diet, no gluten and low carbs, also worked for me. The only problem is that I spend a lot of time cooking and have difficulty going out for a meal. But I am really well, if a bit thin, on this regimen. Be aware that chicken/turkeys and beef are fattened on wheat!
That won't bother me as I have been a veggie for over 25 years and have no plans to go back to carcass crunching thanks.lol.
I am also big in all things fresh and home cooked. Have you looked at the "gluten free chats" section as it has some good tips and recipes that people have shared.
Am trying to go gluten free myself at the moment but finding it hard. Will get there in the end though I'm sure.
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